I have received many emails and Facebook messages lately asking me essentially the same questions:
“How do you pace yourself?” “How can you exercise with POTS?” “How are you able to work?” “What helps you the most to manage your POTS and EDS?”
I started thinking about it and decided that instead of replying the same way each time, I would try my best to make a post that hopefully answers some of these questions. I thought back to when I was first diagnosed and was at my sickest, and remembered how scared and helpless I felt. I remember feeling like my life had spun out of control in an instant, and I had no clue how to get the control back. I also remember thinking that I would pay BIG bucks if someone…ANYONE would just tell me what to do so that I could get back to being a functioning adult.
The problem is this:
I am not a doctor.
I have realized that what works for one does not always work for another.
I am still learning myself how to function the best I can~especially on my bad days.
I have also learned that there is no way to make one POTSy and EDS guide that will help everyone. There are many reasons for this…POTS has many different causes, there are different types of EDS and POTS, EDS and POTS are both spectrum diseases, and the list goes on…
With that being said, I WILL say that I have learned a bunch along the way about what helps ME manage my symptoms. It is those things that I will outline in the rest of this post.
- I do best when I look at having EDS and POTS as my other job. I teach in the morning, and I work at managing EDS and POTS the rest of the workday. I try to treat having EDS and POTS like a business. When I need to make decisions about my health, especially the hard decisions, or when I am waiting for something nerve-wracking like test results, I try to keep as much emotion as I can out of it. If I run my health like a business, I am more likely to make level-headed, rational decisions.
- Naps and sleep are not a luxury. They are a necessity when it comes to functioning. I used to feel guilty about taking two hours a day to nap, but I have learned the hard way that if I don’t, I may not be able to function the rest of the day, or even the next day. I also need 8-9 hours of sleep a night. This is when my body gets a chance to recover. I must be disciplined about giving it the rest it needs.
- Along with rest, exercise keeps my body moving, “glued” together, and able to function; especially to teach. I was unable to do any cardio when I first became sick. It was only after I started taking a Beta Blocker that things began to slowwwlllyyy improve. The Beta Blocker helped me get back on my feet again (literally) for a couple of minutes at a time. It took me over a year of taking meds and rehabbing, to get to the point where I can now put in an hour workout, including 30-45 minutes of cardio. When I started, two minutes of walking on the treadmill made me almost pass out, and would put me on my back for the rest of the day. I had to remind myself of the “P” word constantly. PATIENCE. It all takes time. Keeping my muscles strong has been crucial for me to fight both EDS and POTS. I need to exercise at a minimum three times a week. Dr. Grubb in Toledo once told me that strong legs and abs will act as my “second heart” that will help keep my blood pumping to where it needs to go. I have found this to be very, very true. If it weren’t for exercising, I know I would be unable to work.
- Choices. Having EDS and POTS is a constant balancing act for figuring out what I need to do and what I want to do. Obviously what I need to do has to come first. Honestly, this is something I am currently struggling with. This time of year, there are so many getaways, concerts, tailgates, etc. that I would love to be able to attend, but when it gets to the weekend, I know that if I do not take the time to recover, I won’t be able to do what I need to do…and right now, that is teach. Therefore, this means unfortunately missing out on some of the fun stuff.
- I drink tons of water to keep my blood volume up (and yes, I pee a lot). I also eat packets of salt and soy sauce when I am really POTSy. I try to limit my bread intake because too much bread makes my Gastroparesis flare (and I’m Italian!)
- I take Midodrine, Propranalol, and Prozac to manage my POTS symptoms. I take Domperidone to manage my Gastroparesis.
- When I was first diagnosed, I was told that I would most likely need a skull-C2/3 fusion. So far I have been able to avoid it with prolotherapy treatments every 4-8 weeks.
- I manage my pain and symptoms through strengthening, weekly physical therapy, heat and ice, anti-inflammatory foods like ginger, a massage pillow, and regular sessions of Osteopathic Manipulative Medicine.
- Pacing. This is huge. I find that making choices, resting, exercising, and pacing all go hand in hand. For example, if I go shopping, I know I will need to follow-up the outing with time to rest. If I am out at a concert, I better have nothing scheduled the next day so I can rest and recover. Even while I am teaching, I have found ways to pace. I alternate teaching lessons sitting, kneeling, and standing. I try to have a special class each morning so I can have a small rest period while the kids are in art, music, PE, or library. I sit with the kids for most of circle time. I have had to learn to say no to the “extras” so I can make sure that I can accomplish the “must-do’s.” This quote sums it up a lot: “I can do some things, but I cannot do everything.”
- As much as I hate it, it is important for my peace of mind to know I always have access to a wheelchair, neck brace, and handicap sticker for my bad days. I have come to understand that these devices help give me freedom when I would otherwise be home-bound on my bad days.
- I rely on my support system a lot. For example, Brad grocery shops since that is one of the hardest, most stressful things for me to do. My Dad is retired so he will run errands for me if I need him to. My colleagues step up and help me at work when I am struggling. My Mom and I spend Sunday afternoons together; even on days when I am in the wheelchair and she has to push me.
- I find ways to cheat. Online shopping, especially at Christmas is amazing. I use lamps in my classroom since fluorescent lighting exacerbates my POTS symptoms.
- I travel to Indiana, around Michigan, and to Ohio to see specialists because these are the doctors I have come to trust.
- I find things I can do sitting down that give me a purpose. That is how “Life as a Zebra” and the benefits/fundraisers came to be.
- I can only read support groups in small doses. Honestly, for me, they can often scare me and give me a bad case of the “what-if’s.”
- I see a psychiatrist regularly to help me deal with life.
- I read inspirational books, and try to keep as much negativity as I can out of my life. I spend time exploring my faith, and every Sunday I spend one hour at church immersed in the quiet of my thoughts, questions, prayers, and beliefs. I always put Holy Water on the places I am having pain, and I always give thanks to God for being able to make it through another week.
- I also always try to remind myself of this:
“Do what you can, with what you have, where you are.” ~Roosevelt
So that folks, in a brief nutshell is my second job description. I would love to get paid to keep my body healthy, but somehow I don’t think that will ever happen
I want to leave this post at this:
All of us zebras are in different places. We are all on different paths. And we must all remember to be kind to ourselves, and remind ourselves that the fact that we are zebras is not our fault, and we are doing the best we can.
Zebra Love Always~
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